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Financial support if you have, or had, a brain tumour

The Brain Tumour Charity does not provide financial help directly, but if you are affected by, or are living with, a brain tumour or brain cancer, you may be entitled to certain financial benefits.

The benefits you are entitled to will depend on your circumstances. You may be able to claim more than one type of benefit e.g. Personal Independence Payment (PIP) and Employment and Support Allowance (ESA).

If you have a brain tumour (low or high grade), it is likely that in the eyes of the law you are considered to have a disability, even though you may not see yourself that way.

What types of financial support are available?

Statutory Sick Pay (SSP)

Statutory Sick Pay (SSP) is paid by your employer, for up to 28 weeks, if you are too sick to work. To qualify you have to:

  • be classed as an employee (working under a contract)
  • have been ill for at least 4 continuous days (including non-working days)
  • earn at least £116 per week (before tax)
  • tell your employer you are sick before their deadline (or within 7 days, if they don't have one).

You may get more if your company has a 'sick pay scheme' or 'occupational scheme'. Some types of workers e.g. agricultural workers, have different rules.

If you are not eligible for SSP, you may be able to claim Employment and Support Allowance (ESA).

Personal Independence Payment (PIP)

Personal Independence Payment (PIP) is a benefit to help with the extra costs of a long-term health condition or disability. The amount you get depends on how your condition affects you, not on the condition itself.

PIP is gradually replacing the Disability Living Allowance (DLA) for new claimants between the ages of 16 to 64. (If you are already receiving DLA you will be invited by the DWP [Department of Work and Pensions] or the Department for Communities [in N Ireland] to apply for PIP. You don't have to do anything until the DWP/PIP centre writes to you.)

PIP is paid at different rates depending on your individual circumstances. The amount you get depends on how your condition affects you, not on the condition itself.

To get PIP, you must need help with everyday tasks (such as cooking, washing or dressing) or getting around - or both. You must have needed this help for at least 3 months and expect to need it for at least another 9 months.

You must also have lived in the UK for at least 2 of the last 3 years, and be living in the UK when you claim. PIP is made up of two components - the 'daily living component' and the 'mobility component'. It is possible to receive one or both parts, depending on the outcome of your assessment.

PIP is made up of two parts or components (it is possible to get both parts, depending on the result of your assessment):

Daily living component (given to people who have difficulties with everyday tasks, such as cooking, washing or dressing)

  • Enhanced rate
  • Standard rate

Mobility component (given to people who have difficulties walking or getting around)

  • Enhanced rate
  • Standard rate

Claims can still be made for Disability Living Allowance (DLA) for children under the age of 16. Rates paid are dependent upon the level of difficulty the child faces with getting around, including if they need supervision when they are out, and/or the amount of care they require.

People aged 65 or over can apply for Attendance Allowance.

Understanding the PIP process

​Attendance Allowance (AA)

If you are aged 65 or over and need help with personal care due to physical or mental disability, or you need supervision to keep you safe, you may be eligible for the Attendance Allowance.

This is a tax-free benefit currently paid at higher and lower rates.

If you have a terminal illness, you automatically qualify for the higher rate.

If you get Attendance Allowance, some of the other benefits you may be getting may increase e.g. Pension Credit, Housing Benefit or Council Tax Reduction.

How to claim

You need to fill in a form AA1A, which you can get from the Attendance Allowance Helpline:

Telephone: 0345 605 6055

Textphone: 0345 604 5312

Mon - Fri, 8.00am to 6.00pm

The form comes with notes about filling it in and where to send it. You can get help to fill the forms from a benefits adviser from Citizens Advice, make an appointment at our benefits clinic.

​Employment and Support Allowance (ESA)

ESA replaced Incapacity Benefit in January 2011. ESA provides financial support to those who are either not able to work because of an illness or disability and are not entitled to statutory sick pay (SSP), or who are limited in the work they are able to do.

You can apply for ESA if you are employed, self-employed or unemployed. There are two phases to an ESA claim:

  • assessment phase
  • main phase.

Assessment phase

The assessment phase is meant to last for 13 weeks, but in practice it can last longer. During this time you will be expected to undergo a work capability assessment to see how your illness or disability affects your ability to work or carry out work-related activities.

In this phase, you are paid at a basic assessment rate depending on whether you are over or under 25 years old.

At the end of the assessment phase, a decision will be made about whether you are eligible for ESA. If you are eligible, you will the enter the main phase.

Main phase

If you are enter the main phase, you will then be grouped into one of two groups:

  • Work-related activity group – where your assessment shows that you are not currently able to work, but are likely to become able to do some sort of work in the future. You will be given support to help you prepare for work.
  • Support group – where your assessment indicates that your illness or disability affects you to such an extent that you are not able to work (though you may wish to carry out some voluntary work).

In some circumstances, certain premiums may be paid on top.

Access to Work grants

You may be able to apply for an Access to Work grant to pay for taxi fares to work, if you’re:

  • in (or about to start) paid work or self-employment
  • 16 or over, and
  • your brain tumour means you’re unable to use public transport.

Funding can cover up to 3 years, but you’re normally reviewed every year to see if you still need the funding.

You might not qualify if you’re claiming certain benefits, such as Incapacity Benefit, Employment and Support Allowance, Severe Disablement Allowance, Income Support and/or National Insurance Credits.

Find out more about Access to Work by ringing the helpline on 0800 121 7479 or, if you live in Northern Ireland, you can speak to an Employment Service Adviser in your local Jobs & Benefits office or JobCentre.

Free prescriptions

This section applies to England only. Prescriptions in Wales, Scotland and Northern Ireland are free.

Certain circumstances entitle you to free prescriptions. These include a continuing physical disability which means you cannot go out without the help of another person, or someone who, in the judgement of your doctor, is receiving treatment for:

  • cancer
  • the effects of cancer, such as palliative care and mental health changes since diagnosis
  • the effects of current or previous cancer treatment, such as sideeffects of chemotherapy drugs or late effects of radiotherapy.

You should ask your doctor for a Medical Exemption (MedEx) form to apply for this exemption. (It is sometime known as an FP92A form). The form will need to be countersigned by your GP or hospital - this is to prevent fraud.

You should receive your exemption certificate within 10 working days of the NHS receiving your application.

Your certificate covers all your prescriptions, not just those related to your tumour and its treatment.

Your MedEx is valid for five years, by the end of which you can renew by re-applying through your doctor.

If you have, or had, a low grade tumour (which are sometimes described as 'non-cancerous'), you should discuss whether you can get a Medical Exemption certificate with your doctor. The complicated nature of the disease and its long-term effects mean it may not be clear-cut as to whether you are eligible.

Your doctor will know your individual case and whether you may qualify under these, or other, rules. For example, if you take life-long anti-epileptic medication for brain tumour-related seizures, or if you have another health condition, such as diabetes.

Find out more about eligibility for free NHS prescriptions and help with prescription costs.

Prescription prepayment certificate (PPC)

This section applies to England only. Prescriptions in Wales, Scotland and Northern Ireland are free.

If you are not eligible for free prescriptions, but need them regularly, a prescription prepayment certificate (PPC) could help you save money. By pre-paying, it lets you get as many prescriptions as you need within the period of the certificate for a fixed price. Find out more about prescription prepayment certificates. You can also pick up a form and get help filling it in at your local pharmacy. Once your application has been processed, you will receive a PPC card, which you will need to show when you go to collect your prescriptions.

Having a PPC, therefore, saves you money if you need more than 3 prescriptions in 3 months, or more than 12 prescriptions in 12 months.

What if I am terminally ill?

Some people diagnosed with a brain tumour will become terminally ill. If you have a terminal illness and are not expected to live for more than six months, there are special rules about claiming PIP, AA or ESA. These special rules also apply if you are claiming DLA for a child under 16 who is terminally ill.

These rules speed up the process of claiming by fast-tracking your application. You also automatically qualify for the highest rates of these benefits. You should receive your first payments within 2 weeks.

How do I make a claim?

To make your claim, call the claim line(s) for the benefit(s) you are claiming. Then organise for your doctor (or consultant) to send a short medical report called a DS1500.

You don't have to see your doctor to get the report - a nurse or the doctor's receptionist can arrange for the report to be issued, and it is free. You then post the report to the DWP (England, Scotland and Wales) or the Disability and Carers Service [DCS] (N. Ireland).

Healthcare professionals in England or Scotland can access and complete a DS1500 form online, using the Digital DS1500 Service. This means the report arrives at the DWP in real time, thereby reducing the waiting time for the patient. Ask if your doctor has access to this service. (The DWP is rolling out this service, so it will subsequently be available in Wales - ask your doctor if it's available in your area.)

Financial support if you are caring for someone with a brain tumour

Carer's Allowance

Carer's Allowance is available to people looking after someone who is receiving the daily living component of PIP, the higher or middle rate of Disability Living Allowance, or the Attendance Allowance.

Basic eligibility criteria for all 4 countries of the UK are as follows:

  • you must have lived in England, Wales, Scotland or Northern Ireland for at least 2 out of the last 3 years, and normally live in one of these countries
  • you must be at least 16 years old
  • you must care for someone for at least 35 hours per week
  • you must not bring home more than £116 per week after tax and some expenses
  • you must not be in full-time education, nor studying for 21 or more hours per week.

You don't have to be related to, or live with, the person you are caring for. If you claim Carer's Allowance, other benefits that you get can be affected. Benefits received by the person you care for can also be affected.

Carer's Credit

Carer's Credit helps you fill in gaps in your National Insurance if you are caring for someone for more than 20 hours per week. In other words, it protects your ability to qualify for a state pension if you have to take time off work for caring.

You must be aged between 16 years and the state pension age. The person you are caring for also has to be getting certain benefits.

Other financial support for both patients and carers

​Income Support

This provides a 'top up' to people on low, or no, income who are not able to work full-time, particularly carers or those looking after young children. Eligibility criteria are different for Northern Ireland.

The amount you are entitled to varies according to your circumstances, but if you qualify and have no income, you will get at least £57.90 per week (October 2018).

Basic eligibility criteria for England, Wales and Scotland are as follows:

  • be a carer, a lone parent looking after a child under 5, pregnant or, in some cases, unable to work as you are sick or disabled
  • you must be living in England, Scotland or Wales
  • you must work less than 16 hours per week and your partner must work less than 24 hours per week
  • you must be between the ages of 16 years and the age you would receive pension credit
  • you must have no income or a low income and must not have savings above £16,000 (your partner's income and savings are taken into account)

You must not receive Employment Support Allowance, Jobseekers' Allowance or Universal Credit. Basic eligibility criteria are slightly different for Northern Ireland. For example, you must not be signed on as unemployed.

Council Tax Reduction

In England, Scotland and Wales, if you are on a low income or claim benefits you may be able to get a reduction in your council tax. Depending on your circumstances, your bill can be reduced by up to 100%.

A full council tax is based on at least two adults living in the home. So if you live on your own, or with someone who 'doesn't count' for council tax purposes, you can get a 25% discount. Various people 'don't count' as an adult, including people with severe mental impairment. If they live on their own, the whole property can be exempt from council tax.

If your home is the main home to someone with severe and permanent disabilities, you may be eligible for the Disabled Band Reduction Scheme.

Your council tax could be reduced to a band lower than your home should be normally. This means, for example, that you would pay band B rates on a band C home. Even if your home is band A (the lowest band), you would receive a reduction.

To be eligible for a council tax reduction under this disabled scheme, your home should have at least one of the following:

  • an extra kitchen, bathroom or other room that is necessary for the person with the disability
  • extra space for the person with the disability to use a wheelchair

Overall, whether you get a CTR, and how much, will depend on where you live. This is because each council has its own rules. Contact your local council to find out if you can get a reduction.

Housing benefit

If you are receiving certain benefits and are on a low-income, whether working or not, you may be entitled to claim housing benefit to help with the cost of your rent.

How much you get will depend on your income and your circumstances.

Working tax credit

Working tax credit is a payment that may be available to you if you (or your partner) are working, but earning a low income.

To qualify you must be aged over 25 years, or between 16 and 24 years with a child or a qualifying disability, and it will depend on how many hours you work.

The amount you receive is calculated based on several factors.

Child tax credit

If you have one or more children in your care (i.e. the child/ children usually live with you), and you receive child benefit for them, you may be eligible to receive child tax credit.

Your income must also be under a certain limit (although the exact amount depends on your circumstances). The amount you receive is calculated based on several factors.

Pension credit

Pension credit is an income-related benefit for retired people and consists of two parts:

  • guarantee credit - you or your partner must have reached the Pension Credit qualifying age. This is the current state pension age for women. You may be eligible for this if your income is below a certain level
  • savings credit - you or your partner must be aged 65 or over. You may be eligible for this if you have some savings or a second pension, and reached state pension age before 6 April 2016.

You may be entitled to more if you are disabled or are a carer.

Universal credit

Universal credit is for people who are on a low income or out of work. It is being rolled out across the UK. It will replace most income based benefits, such as:

  • income-based Jobseeker's Allowance (JSA)
  • Housing Benefit
  • Working Tax Credit
  • Child Tax Credit
  • income-related Employment and Support Allowance (ESA)
  • Income Support.

The amount you get depends on your circumstances. It is made up of a basic 'standard allowance' and any extra amounts that apply to you.

You may get extra money if you have a disability or health condition that stops you working; if you have a disabled child; or you are caring for a disabled person.

Financial grants for individuals

Whilst The Brain Tumour Charity does not give financial help for individuals directly, we can advise you on charitable sources that help people in financial hardship. Contact our Information and Support Line on 0808 800 0004 or support@thebraintumourcharity.org

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